Ben’s Stem Cell Transplant

A guide for children who are having a stem cell transplant (SCT)

Ben’s Stem Cell Transplant

Original version published by the Children’s Cancer and Leukaemia Group

Publications Committee (UK)

Edited by Julie Guest.

Illustrated by Christine Sharp.

About you

This booklet is yours to help you to understand why you need a

stem cell transplant (SCT) and to explain some of the things that may

happen to you. You probably need to have a stem cell transplant

because some of your blood cells are not working properly.

my first name:

my hospital:

date of transplant:

my age:

With thanks to:

And Ward 27B Starship Children’s Hospital

What are stem cells? Meet Ben

Stem cells make all your blood cells in a factory called the

bone marrow. Your factory isn’t making some of your blood

cells properly and a stem cell transplant will try to help the

factory to work better.

Platelets stop you from

bleeding when you get a cut

or fall over and hurt yourself

This is Ben. He’s going to tell

you about what it’s like to

have a stem cell transplant.

White blood cells

help your body to

fight infections

Red blood cells give

you energy to help you

run around and play

4 5

Ben will begin by telling you what

happens before a transplant.

You are likely to have many

different tests before your

transplant, to make sure your

body is ready.

X-ray

Blood tests

Dental check

Heart scan

Breathing tests

Kidney test

Height

Weight

Ben met lots of new people during his stem cell transplant.

Here’s a list of the different people you may meet.

Transplant doctors

Transplant nurses

Dietitian

Teachers

Social worker

Physiotherapist / Occupational therapist

Psychologist

Health care assistant / Cleaners

Find out which of these tests

or measurements you will need

and if you will need to have

anything else done as well.

You might like to write down their names to help you

remember them, or draw a picture of them.

Tests Hospital staff

6 7

Before your transplant

you and your family

will be shown around

the Transplant Unit.

Coming into hospital for your stem cell transplant can feel

strange. You may stay in hospital for around six weeks,

sometimes longer. This may seem a long time

and you probably want to know what will

happen and how you will feel.

Everyone feels differently about going to

hospital. Do you feel excited, nervous, happy,

frightened, sad, angry, scared or worried?

You may find it helps to talk about

these feelings.

When you have your transplant you need

to go into a room on your own which will

be your special bedroom. You may hear

people calling this ‘isolation’, but your

family and friends can visit you there.

The Stem Cell Transplant Unit

8 9

A central line, which is sometimes called

a ‘Hickman line’, is used for blood tests

and to give you the treatments you need.

If you don’t already have a central line,

you will need a central line put in before

your transplant. It will stay in for a few

months and will not stop you playing or

going to school, but you will not be able

to go swimming.

Before I started my

treatment for transplant,

I went to theatre to have

a central line put in.

Before you can have your transplant, you will be given

some treatment to get your body ready for the transplant.

For some children this treatment is for a couple of days

and for others it can last up to two weeks.

This treatment may include chemotherapy,

or radiotherapy, or both.

Chemotherapy is a special treatment

with medicine. These medicines may be

given through your central line or into

your mouth. Their main job is to kill any

cells in your body that don’t work properly and to

destroy your own stem cells so they can’t fight with

the new stem cells after they are given to you.

Ben found it helped to think of chemotherapy

as being members of an army.

Ben’s treatment

10 11

Radiotherapy is not given to all children who have a stem

cell transplant. Radiotherapy is a special kind of X-ray that

kills any cells in your body that don’t work properly and also

destroys your stem cells too.

Having radiotherapy does not hurt but it is very important

that you keep very still during this treatment. Radiotherapy

lasts for about 20 minutes. The X-ray machine makes a funny

noise. No one else can stay in the room with you while you

have your radiotherapy but usually they can see and hear you

on a special television screen.

Do you need to have radiotherapy before your transplant?

Radiotherapy

Ben found watching his favourite movie or listening

to his favourite music helped to pass the time.

Think about which DVD or music

you will take with you.

Transplant Day

After your chemotherapy or radiotherapy or both, you will

be given the stem cells through your Hickman or central line.

Your doctors and nurses call transplant day ‘day 0’.

About two weeks after chemotherapy and radiotherapy your

hair may begin to fall out. This will not hurt. Your eyebrows

and eyelashes may fall out as well.

Some children have their hair

cut short before their

transplant. Others get a

special cap, hat or wig

to wear until their

hair grows back.

New hair grows

back after 3–6

months.

12 13

We would like you to clean your teeth with a soft toothbrush

and toothpaste or use a mouthwash 3–4 times a day.

If your mouth becomes too sore for this you can use

special sponges.

Your doctor and nurses will probably ask to look in your mouth

every day.

Chemotherapy and radiotherapy can make you feel sick.

After your treatment has finished this feeling may carry on

because of other medicines or problems. The nurses will

give you medicine in your mouth or central line to help stop

this sick feeling.

It is really important to tell the nurses if

you feel sick so they can try to help you.It is very important to tell them how it feels, especially

when it hurts, so they can help to make your mouth feel

a bit better by giving you painkillers.

Ben looked after his mouth

Ben found it really helped to suck

ice cubes or drink small sips of

water regularly.

Chemotherapy and radiotherapy can

make your mouth sore because they kill

the good cells as well as the bad ones.

The best way to help this problem is to

keep your mouth clean.

Ben found sucking ice blocks or ice

cubes helped him when his mouth

was sore. When his mouth was very

sore Ben did not want to eat or drink.

Ben’s mouth did get better though.

14 15

The treatment you will have will destroy your old stem cells.

This means you will not have many white cells left.

White blood cells are important to help protect your body

against infection.

Ben had a tube down his nose and into his tummy. It was not

very nice when the tube was put in but it stopped his family

asking him all the time to eat and drink. The tube meant

Ben could have the special milk feed that helped him stay

strong during his transplant. This tube can also be used for

medicines which really helped Ben.

Ben’s tube Ben’s special bedroom

If the milk feed makes you

too sick, you can have

another special feed (TPN)

given to you through your

central line.

The reason you will have a special bedroom of your own in

hospital rather than sharing with other children is to keep you

safe from infection. Someone

from your family can stay near

you to look after you, and you

can have visitors as long as

they are well.

You may like to keep in touch

with your brothers or sisters

and school friends by phone,

letter, text or online.

16 17

You will be asked to

wash, shower or bath

and to put on clean

clothes each day.

Your family can

help you

with this.

Ben spent a lot of time on the computer, he played

games and did his schoolwork so he wasn’t too bored.

Have you decided what you would like to do

so you don’t get too bored?

Ben’s bathtime How Ben kept busy

Why don’t you

write a list so you

can talk about it

with your nurses

and occupational

therapist.

18 19

You won’t be allowed to

eat the skin on fruit or have

eggs with runny yolks.

You may not be allowed to

eat some of your favourite

foods for a while because

they may cause you to have

a sore tummy or diarrhoea.

When your new stem cells start to work you will be able to

start leaving your special bedroom.

The nurses and doctors will know when you are ready to do

this by checking your blood count

When Ben was told he could leave

his room, he was very excited.

He was a little frightened as well,

because he had been in isolation

for a few weeks.

Some children need to stay in

isolation longer than this because

of an infection.

Ben could now get ready to

go home.

What Ben could eat Ben was feeling better

Make a list of the foods

you like to eat so your

nurse can talk to you

about what you can and

can’t eat during

your transplant.

20 21

When you get home you will

need to take some medicines.

Usually, you can choose

between tablets or liquids, so

make sure you ask if you are

not given this choice.

Ben found some of the

medicines were easier to

take with his favourite drink

and that sucking on a lolly

afterwards took the taste away.

If you still have a tube in your

nose to help feed you, it can

be used for some of your

medicines too.

After Ben went home he had to go back to hospital once or

twice a week to have blood taken to make sure the medicines

were working. Ben liked going back to hospital because he

enjoyed seeing all the doctors and nurses again.

When you come back to hospital, we will check your skin

to make sure there are no spots or itchy patches.

Sometimes your new stem cells can have a fight

with your body which may give you a rash or an

upset tummy, so we need to keep checking you.

You may need a different medicine to make

this better. You always must tell your family

if there is anything wrong, so they can

take you to the hospital to sort it out.

Sometimes you may have to come back

into hospital for a few days to sort out

the problem.

Medicines Ben’s hospital visits

22 23

When you leave hospital you need to be

very careful not to catch any germs. At first

this means staying home and having only a

couple of friends over. When your friends

visit it is important they are well and don’t

have any infections. The nurses will tell you

all about this.

You shouldn’t go out to the shops or inside

busy places, but you can go outside into

the fresh air and take short walks to the

park if you feel strong enough.

You won’t be able to go back to school for

a few months but your parents can arrange

for your teachers to send schoolwork

home instead.

You probably will feel quite

tired a lot of the time too,

especially if you have had

radiotherapy. This is quite

normal and you will get a little

stronger and will be able to do

a little more every day.

Don’t worry if you need to

sleep or have a rest during the

day. When your new stem cells

are strong enough you will be

able to go back to school. At

first, you may only go for a few

hours or half a day as you may

still feel very tired. Don’t worry

about this.

Coming out of hospital

24 25

Ben’s hair started to grow

back a few months after

his transplant.

Sometimes, hair can be

a bit darker, a bit lighter,

or more curly when it

grows back.

When Ben stopped needing lots of blood tests or medicine,

he didn’t need his central line anymore. This happened about

3–6 months after his transplant and his central line was taken

out. Then Ben could go swimming and have a deeper bath!

Ben also didn’t need to go to the clinic as often.

We hope Ben’s story has helped you learn all about having a

transplant and understand what is going to happen.

Ben’s hair started growing back Ben’s hospital visits

If you can think of

anything else you’d like

to know, please ask the

doctors and nurses at

your hospital.

26 27

You may hear lots of strange new words when

you’re in hospital. Below are some of the main ones

and what they mean. If you’re unsure about any others,

just ask your doctor or nurse.

ANAESTHETIC When the doctors give you some medicine that makes you go to sleep

during an operation, so you don’t feel any pain.

BLOOD TEST When a tiny sample of your blood is looked at to see how many red cells, white

cells and platelets you have.

CANCER When the cells in your body become abnormal (bad) and continue

to grow on their own, out of control.

CHEMOTHERAPY A mixture of different medicines which treat cancer.

CT SCAN An x-ray where the doctor can look inside your body at all your organs.

You need to lie very still.

HAEMATOLOGIST A doctor that looks after people with blood or lymph node diseases

or problems with their blood or lymph nodes.

HICKMAN LINE One or two lines are inserted under anaesthetic, the end comes out

through a small hole in the skin on your chest.

LYMPHOMA Cancer of the lymphatic system.

LYMPH NODES Where the cells which fight infections and disease live.

Lymph nodes become bigger when they are fighting infection and disease as they are making more cells.

MRI SCAN A scan that allows the doctors to get a clear picture of what’s going

on in your body. It can be quite noisy and even though it doesn’t hurt, you might be given an anaesthetic or some medicine to help you relax.

What these words meanWhat these words mean

28 29

NEUTROPENIC When you hardly have any neutrophils (the white cells that fight infections).

Being neutropenic means you are more at risk of getting infections.

ONCOLOGIST A doctor who treats people with cancer.

PET SCAN Another scan which lets the doctors see what’s going on in your body!

Areas where there is lymphoma will show up on the scan as bright spots.

PICC LINE One or two lines are inserted under anaesthetic the end comes out of a small

hole in your skin on your arm.

PORTACATH A device is inserted under the skin under anaesthetic near the armpit, then

runs under the skin to the main vein in the neck. If treatment is given or blood taken, ‘magic cream’ is put on the skin covering the portacath one hour beforehand – to make it go numb so it will not hurt so much when the needle

goes in.

SIDE EFFECT Something that may happen through having treatment, for example,

feeling sick or your hair falling out.

What these words mean

Original version published by the Children’s Cancer and Leukaemia Group Publications Committee (UK) and edited by Julie Guest. Modified by the Leukaemia Foundation of Australia with the support of Australian paediatric haematologists and nurses. Special thanks to Dr Michael Osborn, Bernadette O’Grady and Jill Shergold. The Leukaemia Foundation gratefully acknowledges CCLG for permission to modify and publish this booklet for use in Australia. Illustrated by Christine Sharp.

Leukaemia & Blood Cancer New Zealand is a national organisation in New Zealand dedicated to supporting patients and their families living with leukaemia, lymphoma, myeloma and related blood conditions.

Every family’s experience is different; living with a blood cancer or condition is not easy, but you don’t have to do it alone.

0800 15 10 15www.leukaemia.org.nz

30 31

If you have any questions

or if you are unsure about anything,

please ask a member of your treatment team

or contact Leukaemia & Blood Cancer New Zealand.

Freephone 0800 15 10 15 Telephone 09 638 3556 Facsimile 09 638 3557

Email info@leukaemia.org.nz

National Office: 6 Claude Road, Epsom 1023

PO Box 99182, Newmarket 1149 Auckland, New Zealand

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